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Thursday, May 21, 2015

13 years young- Forever Evan

May 20th 2015 5:58 am.  Just a time and a date.  Evan was so much more then that.  The first time I talked to Evan's mom, she told me that she'd walk over hot coals for her son.  If I remember correctly, Evan was 8 at the time of his diagnosis.  He was happy and rambunctious.  It was hard for me to hear about Evan's antics- Jonah was two then and I mentally prepared myself for our future.  More importantly I was relieved to know that Evan was still full of heart, love and spirit.  July 18th Evan will have been 14 and Jonah will be 7 on the 30th of July.   It's impossible for us to deny what could happen to Jonah over the course of five years.  

Five years, that's the amount of time I told myself that we'd need to have a treatment by.  May 6th was mine and Jeremy's eighth year anniversary.  May 11th 2010 we received Jonah's diagnosis, May 15th is MPS awareness day and May 20th Evan passed away.  Mia would have been 21 today.  I tell myself that they are all just dates- not fate.  I know the clock is ticking for Jonah and our time is running out.   A week ago today, Evan's parents took him to the ER suspect of pneumonia, they took x-rays and indeed Evan had pneumonia, but they also got a glimpse of Evan's hips.  His hips had deteriorated, yet he was still walking... The doctor remarked that he'd only expect to see something like this on a 90 year old man. 

We have been putting off the major exams for Jonah, waiting for the MPSIIIC and D Natural History Study to start.   Not wanting to have to put Jonah through the battery of invasive testing more then we have to.  Now I wonder.... what else could we be missing?!  A few months ago I got anxious about Jonah's liver, his belly was like a big swollen balloon.  I took him in and we got the blood work done.  It took four of us to hold Jonah down. He sat on my lap, my legs wrapped around his and my arms around his chest.  Two more nurses held his arms down while the fourth nurse pulled the blood.  Jonah was foaming at the mouth, kicking and screaming, seriously it was as if he thought he was sitting in an electric chair.   Jonah is almost seven and pushing 60 pounds, my body ached for days. I have no idea how we're going to get blood from him when he's 100 pounds.  Anyhow his liver results were not perfect, but not awful.  The GI doctor wanted to repeat bloods in a month. I talked it over with our geneticists, we agreed to let it ride.  His blood work did not indicate that he was in danger, an infection of any sort could cause elevated liver enzyme levels and lowered white blood cell count.  Jonah is continuously  fighting a cold.  I had the results and I was actually relieved.  I just can't put Jonah through the monthly tests.  We will do the blood work again this summer.

Jonah has bone deformities: vertebra and rib cage, at least two more of our  MPSIIIC friends have hip issues too.  I'm fully aware that Jonah could too, however I'm not rushing him to the doctor. Today Jonah is on a field trip with his class and Jeremy got to chaperone.  They are out at the New York Met's stadium and that's exactly where Jonah should be today.

Make a treatment happen.  Jonah continues to have a good chance to fight his fate.

Forever Evan.  We fight in your memory.